HeLa cells are essential tools in medical research of all kinds. These human cells are defined as “immortal” because they may be cloned for an unlimited number of generations, unlike the normal cells in your own body. If you’ve heard of HeLa cells before, then you may recall from your cell biology or genetics textbook that they originally came from the unique cervical cancer of Henrietta Lacks. The ethical gray areas in her story and the story of her tumor’s cells, together with some sad irony, make for fascinating, if disquieting, reading.

So Who Was Henrietta Lacks?

Henrietta Lacks was wife, mother in a family of tobacco farmers during the 1950s. In 1951, she knew something wasn’t right concerning the pain she had begun having, but she kept quiet about it for a long time. When she finally sought treatment at the Johns Hopkins segregated gynecology clinic , the nickel-sized tumor discovered on physical examination had grown alarmingly fast: a postpartum exam conducted in the same clinic months earlier had failed to mention it. Her phsyician sent samples of it to the pathology lab, but he neither explained his purpose to Mrs. Lacks nor obtained her informed consent. Asking for a patient’s consent simply wasn’t done in that era, when physicians held a social standing that discouraged questions.

Henrietta underwent the standard radiation treatment for invasive cervical cancer. It burned her skin and progressively weakened her until she died. By all accounts, Henrietta was a strong and stoic woman, who never complained of nausea, pain or any of the suffering she must have endured. She died knowing nothing of HeLa cells or the revolution in cell culture they would create.

What Happened to the Sample?

Meanwhile, her doctor’s boss, Richard Wesley Telinde, disagreed with the widespread belief of the day that invasive cancers were deadly but carcinomas in situ (Latin for “cancer in its original place”) were not. He wished to prove that carcinoma in situ is simply an early stage of cancer. By this time, the Pap smear had been around for ten years, but, few women had the test back then (Henrietta didn’t). Even if they did, few doctors were interpreting the results correctly, owing in significant part to confusion about invasive cancers versus carcinoma in situ. Although Telinde was correct, he had been essentially laughed off the stage when he presented this idea at a pathology conference. Consequently, he wished to head a large study proving which pathology results should be concerning and which should not, but he was going to want to need the cooperation of the institution’s key pathologist to do it.

Telinde offered George Gey, respected pathologist and head of tissue culture at Hopkins, access to all of the cervical cancer specimens that came through the clinic, including Henrietta’s. Gey wanted to produce the first immortal cell line of human cancer cells. The National Institutes of Health had already done it with mouse tumors. However, Gey hadn’t enjoyed much success with the project to that point, as all the other samples had died. However, the cells from the tube marked “HeLa” (for “Henrietta Lacks”) didn’t merely survive. In fact, they grew at an astonishing rate, doubling every twenty-four hours. Soon, Gey disclosed to some colleagues that his lab might have grown the first immortal human cell line. They wanted some, and Gey was inclined to share. Professional courtesy and cooperation put Henrietta’s tissue samples in the hands of several researchers, just like that, and without a word to the patient.

Two Worlds in “First-world” Medicine

Despite the extraordinary medical advances made possible by culturing Henrietta Lacks’ cervical tumor, the Lacks family is among many who have felt disenfranchised from the same medical community that nurtured that science. Like many people, the family had historically distrusted hospitals. In their small town, tales of H.G. Wells-like proportions persisted about what might lie in the basement of Johns Hopkins. If the Lackses and their neighbors didn’t know what was really in the basement at Hopkins, their urban legends weren’t entirely out to lunch in the absence of better information.

Much of Skloot’s book recounts the efforts of Debra Lacks, Henrietta’s daughter, to understand what happened to her mother. Debra accepted awards at medical conferences and heard from admiring scientists that her mother’s cancer cells had changed the world. But when she asked specific questions about her mother’s cancer, she was given smiles and fantastic estimates of how many HeLa cells were in various laboratories worldwide. One major player in cell biology gave Debra, who never finished high school, a signed copy of his college-level textbook instead of trying to answer her basic questions, like did her mother feel pain from all the of things researchers were doing to whatever part of her wasn’t dead? Debra had nightmares about these things. Never mind the awards and polite applause, no one was explaining to her just what a HeLa cell actually is. Plus – and I’m just choosing not to dwell on this here – Debra’s brothers and cousins understandably resented living in poverty when a multimillion-dollar market for cells derived from their mother’s cancer exists in laboratories around the world.

Skloot’s book reveals an interesting portrait and articulately explains its relevance in lay terms, but it also pushes the reader to consider some ethically very gray areas. All of the physicians and researchers named seem to have played by the rules of the day and to have genuinely wished to improve the health of their individual patients or public health. However, their blind spots to privacy and informed consent seem chilling to a modern audience. The balance between individual right and the greater good still troubles our society (read: “anti-vaccination debate”).

Perhaps the most important thought I took from this book is that if the medical community wishes to make its case to the people who most distrust and fear doctors, then they still have a long way to go. Soundbites on the evening news about cell cultures in outer space (yes, HeLa cells have been in orbit) or about cloned sheep only play well with a certain audience – and completely freak out people who are unfamiliar or uncomfortable with science. The failure to communicate fosters distrust and persists, and Skloot’s book makes an compelling and readable argument for this thesis.